Draft:ALS Network

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ALS Network
Founded1991
TypeNonprofit organization
Legal status501(c)(3)
HeadquartersWoodland Hills, California, U.S.
Staff~60 (2024)[1]
Websitealsnetwork.org
Formerly called
The ALS Association Golden West Chapter/ALS Golden West

The ALS Network (previously named the ALS Association Golden West Chapter and briefly named ALS Golden West) is a nonprofit 501(c)(3) organization in the United States dedicated to supporting people living with Amyotrophic Lateral Sclerosis (ALS), funding ALS research, delivering care services, and advocating for improved treatments, policies, and access to care.

Mission and Vision

ALS Network states that its mission is "to partner with the ALS community as we drive the discovery of prevention strategies, treatments, and cures for ALS; provide access to quality care and connection; and promote initiatives to improve health outcomes."[3] With services across California, Hawaii, and beyond, the organization seeks to support people with ALS and their caregivers, accelerate research, and strengthen collaborative models in ALS care and advocacy.

History

Founding and chapter era

  • The organization traces its roots to the early 1990s as the Golden West Chapter of the ALS Association to serve ALS patients and families through care services, outreach, and advocacy.[4]
  • As a regional chapter, the organization provided care management, equipment loans, referrals, caregiver support, advocacy, and awareness within its territory in California.[4]
  • In 2014, the ALS Network expanded its service area to the state of Hawaii.
  • On September 1, 2023, the Golden West Chapter formally separated from the ALS Association to retain autonomy in governance, resource allocation, and strategic direction.[5][6] Given alignment with other organizations who separated from the Association, the ALS Network joined 14 other nonprofit organizations from across the United States as a member of ALS United.
  • As a result of the separation, ALS Network is no longer bound by service area restrictions and, thus, focuses on locally led care services, nationwide advocacy, and global research. In-person care services are prioritized in California and Hawaii, with virtual support services available without geographic restrictions. Similarly, local and state level advocacy efforts prioritize California and Hawaii, and are complemented by federal advocacy initiatives to benefit the ALS community in America. ALS Network funds research in the US and elsewhere.
  • Through its affiliation with ALS United, the ALS Network is a member of the International Alliance of ALS/MND Associations.
  • In 2024, the organization rebranded as the ALS Network.[7]

Integrations

  • In 2026, multiple entities integrated with the ALS Network, expanding the organization’s national and global reach and impact.
    • February 11, 2026: ALS ONE and the ALS Network announced a strategic integration that unites the strengths of both organizations to accelerate progress toward faster research and improved access to care resources through ALS ecosystem enhancements and meaningful technological advancements for people living with ALS.[8]
    • February 24, 2026: The ALS Network announced that ALStogether, the rapidly growing online Slack community founded by ALS advocate Brooke Eby, became part of the ALS Network in a strategic decision designed to expand support, connection, and resources for people living with ALS.[9]
    • ALS Ohana: Created to enhance quality of life for people living with ALS and their loved ones in Hawaii, ALS Ohana moved under the ALS Network umbrella in 2026 to enhance community support via comprehensive, localized care and resources.Cite error: The opening <ref> tag is malformed or has a bad name (see the help page).

Leadership and Governance

Executive leadership

  • President & CEO: Sheri Strahl, MPH, MBA
  • Chief Operating Officer (COO): Mike Kallhoff, MM
  • Executive Vice President, Mission Advancement: Cherryl Fluke, JD
  • Vice President, Marketing & Communications: Eric Beikmann
  • Vice President, Community Outreach: Asher Garfinkel
  • Vice President, Care Services: Steve Goclowski, LCSW

Board of Directors[10]

  • Officers (2026): Jared Gill (Chair), Simon Wise (Vice Chair), Pranjal Shah (Treasurer), Mary Ann Wittenberg (Secretary), and Aubrey Rupinta (Officer at Large).
  • Board Members (2026): David Buseck, Elizabeth Chaney, Scean Ellis, Bruce Friedricks, Brenton Hamlet, Justin Ichida, PhD, Jonathan Katz, MD, Travis Laferriere-Holloway, PhD, Caroline Landry, Joseph Lewcock, PhD, Laura Miller, and Karen Sutton.
  • Advisory Trustees (2026): Lorraine Barth, Steve Brourman, MD, John Chino, ARM-E, ARM-P, CSRM, Linda Della, Hunter Doohan, Carol Anne Econn, Joanne "Cookie" Fujio, Robert Hammer, Stacy Inman, Esq., Peter Landecker, PhD, Aaron Lazar, Sue Morris, Victoria "Nohea" Nakaahiki, Dan Navarro, Chris Olsen, MD, Kathleen Rasmussen, Andrew Schneider, Kathy Shawver-Maffei, Richard Smith, MD, I.H. Sutnick, Erin Taylor, Philip P. Thomas, Cameron C. Ward, Esq., Lucy Wedemeyer.

Services & Programs

Care management and support services

ALS Network delivers care management to individuals with ALS and their families, often in collaboration with ALS specialty clinics, with services provided at no cost to people living with ALS and caregivers.[11] Care managers support medical referrals, equipment loans, insurance navigation, home safety assessments, psychosocial support, and coordination with multidisciplinary teams.

The care program includes more than a dozen multidisciplinary treatment centers and nearly 20 affiliated clinics, and coordinates 30+ monthly Connect, Support, Chat groups for specific communities.[12] In particular, care managers host connection groups for: caregiver/loved ones, veterans, those with tracheostomies and ventilators, those living with ALS under age 50, those with familial diagnoses, the general ALS community, LGBTQIA+, Español speakers, adaptive yoga/assisted movement and guided meditation sessions, and bereavement. ALS Network also provides a support group for people with primary lateral sclerosis (PLS).

Research funding and grantmaking

ALS Network funds ALS research with an emphasis on innovative and community-informed projects. In 2024 and 2025, the organization established a Scientific Advisory Committee and a Community Research Committee to ensure patient and caregiver input in setting research priorities. Notably, the ALS Network has launched various drug-repurposing initiatives with academic and national lab partners to find cures and treatments for ALS.

Each January, the ALS Network hosts an annual webinar highlighting outcomes of the year's ALS Network Research Summit, which features transformative and innovative special lectures, panel discussions, and scientific presentations delivered by participants from California, Hawaii, the U.S., and beyond.[13]

Advocacy, awareness, and public events

The organization engages in advocacy at local, state, and federal levels to promote ALS funding, equitable access to therapies, and regulatory reforms.[14] Working in partnership with the ALS community, the ALS Network's advocacy efforts have led to increased federal and state funding for ALS research, passage of the Medicare waiver for ALS patients, the presumptive disability ruling from the Social Security Administration, and state funding that supports increased access to care.

Each May, the organization celebrates ALS Awareness Month in collaboration with local government offices. In 2025, ALS Awareness Month proclamations were signed by: California Governor Newsom, Thousand Oaks Mayor David Newman, Hawaii Governor Josh Green, Hawaii County Mayor Kimo Alameda, and Maui Mayor Richard Bissen.[15]

As of 2025, the ALS Network's advocacy program has resulted in the signing and progressions of the following legislations:[16]

  • CA AB 424: ALS/Neurodegenerative Disease Registry
  • CA AB 511: California ALS Research Network Voluntary Tax Contribution Fund
  • HI HB701: Family Caregiver Tax Credit
  • H.R.1685/S749: Justice for ALS Veterans
  • HR2036/S. 925: Credit for Caring Act of 2025
  • S.1261: CONNECT for Health Act
  • H.R.5663/S.3258: ALS Better Care Act
  • H.R. 8371/S.141: Senator Elizabeth Dole 21st Century Veterans Healthcare and Benefits Improvement Act
  • H.R. 9233: The Bipartisan Healthy Brains Act

Community Outreach

ALS Network hosts community awareness and peer-to-peer fundraising events in key areas throughout the nation including California, Hawaii, and Massachusetts, including Walk & Roll to Cure ALS and endurance events. All proceeds from the ALS Network's events are utilized to support programs and services for the ALS community within their respective service areas. To learn more about the ALS Network’s events visit: Community Outreach Events | ALS Network.

Recognitions

Ratings and Accreditation

  • BBB Wise Giving Alliance: Accredited, meeting the 20 Standards for Charity Accountability.[17]
  • Candid Platinum Seal of Transparency: This is the highest level of recognition awarded by Candid (formerly GuideStar) to nonprofits that provide deep, public insights into their goals, strategies, financials, and impact. It signifies that a nonprofit is in the top 0.1% of organizations for transparency and building donor trust.[18]
  • Charity Navigator: Four-Star rating; overall score 100/100, including beacons for Accountability & Finance, Leadership & Adaptability, and Culture & Community.[19]
    • The organization reports maintaining the highest Charity Navigator rating since 2013.

References

  1. ^ "ALS Network (formerly ALS Association Golden West Chapter)". Cause IQ. Retrieved {{subst:CURRENTDAY}} {{subst:CURRENTMONTHNAME}} {{subst:CURRENTYEAR}}. {{cite web}}: Check date values in: |access-date= (help)
  2. ^ Alvarez, Nathan (2024-01-31). "Welcoming Our New President & CEO". ALS Network. Retrieved {{subst:CURRENTDAY}} {{subst:CURRENTMONTHNAME}} {{subst:CURRENTYEAR}}. {{cite web}}: Check date values in: |access-date= (help)
  3. ^ "ALS Network, formerly ALS Golden West - National Organization for Rare Disorders". 2024-02-29. Retrieved 2026-05-14.
  4. ^ a b "ALS Network (formerly ALS Association Golden West Chapter)". Cause IQ. Retrieved {{subst:CURRENTDAY}} {{subst:CURRENTMONTHNAME}} {{subst:CURRENTYEAR}}. {{cite web}}: Check date values in: |access-date= (help)
  5. ^ Alvarez, Nathan (2023-07-06). "A special announcement from Golden West leadership". ALS Network. Retrieved {{subst:CURRENTDAY}} {{subst:CURRENTMONTHNAME}} {{subst:CURRENTYEAR}}. {{cite web}}: Check date values in: |access-date= (help)
  6. ^ "Frequently Asked Questions". ALS Network. 29 June 2023. Retrieved {{subst:CURRENTDAY}} {{subst:CURRENTMONTHNAME}} {{subst:CURRENTYEAR}}. {{cite web}}: Check date values in: |access-date= (help)
  7. ^ "A Full Service Branding and Digital Agency | Lewis". www.lewiscommunications.com. Retrieved 2026-05-14.
  8. ^ Network, A. L. S. "ALS ONE and the ALS Network Align to Scale ALS Research and Technology Impact Nationwide". www.prnewswire.com (Press release). Retrieved 2026-04-02.
  9. ^ Martin, Vanessa (2026-02-24). "ALS Network Welcomes ALStogether Slack Community, Expanding Digital Support and National Reach | ALS Network". ALS Network. Retrieved 2026-04-02.
  10. ^ "Leadership | ALS Network". 2022-08-31. Retrieved 2026-04-02.
  11. ^ "Care Services and Support | ALS Network". search.auw211.org. Retrieved 2026-05-14.
  12. ^ "ALS Network". BBB Wise Giving Alliance (Give.org). Retrieved {{subst:CURRENTDAY}} {{subst:CURRENTMONTHNAME}} {{subst:CURRENTYEAR}}. {{cite web}}: Check date values in: |access-date= (help)
  13. ^ "16th ALS Research Summit". sites.google.com. Retrieved 2026-05-07.
  14. ^ CDC (2026-03-10). "Organizations that Support People Living with ALS". National Amyotrophic Lateral Sclerosis (ALS) Registry. Retrieved 2026-05-14.
  15. ^ Liu, Eileen (2025-05-23). "ALS Community Joins Together for ALS Awareness Month | ALS Network". ALS Network. Retrieved 2026-05-07.
  16. ^ "Public Policy Priorities | ALS Network". 2022-08-31. Retrieved 2025-11-25.
  17. ^ "ALS Network". BBB Wise Giving Alliance (Give.org). Retrieved {{subst:CURRENTDAY}} {{subst:CURRENTMONTHNAME}} {{subst:CURRENTYEAR}}. {{cite web}}: Check date values in: |access-date= (help)
  18. ^ "ALS Network (formerly ALS Golden West)". GuideStar. Retrieved {{subst:CURRENTDAY}} {{subst:CURRENTMONTHNAME}} {{subst:CURRENTYEAR}}. {{cite web}}: Check date values in: |access-date= (help)
  19. ^ "ALS Network". Charity Navigator. Retrieved {{subst:CURRENTDAY}} {{subst:CURRENTMONTHNAME}} {{subst:CURRENTYEAR}}. {{cite web}}: Check date values in: |access-date= (help)

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